Study on GDC0077

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  • babs6287
    babs6287 Member Posts: 2,021
    edited September 2017

    Sorry I haven't written in awhile on this thread. Well, traveling while being part of this study was rather easy. Two of the pills have to be refrigerated. So I brought a freezer pack with me on the flight thinking they would take the medication, put it in their refrig and put the ice pack in their freezer. NO! They would not be responsible for a customer's meds. While I did understand it was disappointing. My drugs were still cold after the flight (I kept them with me in the freezing flight cabin all the time- slightly narcotic about losing them!) Once we got to the hotel, they were put into the mini-frog. We gave the ice pack to the concierge who when we left found out that they didn't understand that it needed to be in a freezer-they kept it in their refrain so then we just asked them for a big bag of ice which we then traveled with to other hotels. Thank god all the other hotels understood about keeping n ice pack in a freezer!!!!!

    After two weeks away and lots of walking I can report that I managed to do almost everything I wanted. I did get tired but it was also sooooo hot. Not sure if my being tired was a function of the meds or the heat to be honest. We had a great time and truly enjoyed without the worry of missing a chemo treatment.

    This Thursday as my second (and thankfully last) 8 hour day at MSKCC. Got to MSKCC w/o eating or drinking as required Here's my day

    8:30 appointment time

    9:15 finally taken-weight, temp, O2 levels, blood pressure, finger stick for glucose level and eKG. They tried to get an IV line in due to all the blood draws needed but alas my veins didn't want to cooperate. I guess 2 weeks away wasn't enough! After 3 tries and two different nurses they called in a Sr. nurse who has been successful with me before and yes, the line got in. They did have trouble getting the 10 vials needed but finally it was done at 10:15. My poor arm! The study nurse gave me my pills to take at 10:20.

    10:50-another blood drawer -only 2 vials and vitals. Blood was VERY slow to come out-really an issue

    11:20 another blood drawer-again an issue getting the 2 vials. Vitals done and EKG

    12:20-another blood drawer- getting even harder to get 2 vials. Vitals done

    1:20 I could eat (3 hours after taking the meds)

    2:20 vitals, EKG and major issue getting the 2 vials of blood so they pulled the IV line and did a stick-still hard to get the 2 vials.

    6:20 vitals, EKG and stick for the 2 vials of blood. They tried a new spot altogether and no issue. Thank god!

    In between the 12:20 and 2:20 I went home to rest and to eat at 1:20. I also went home and took a nap in-between the 2:20 and 6:20. Actually I played down to watch TV and passed out and woke up just in time to get back for the 620 .

    At the end of the day I went home and basically vegged out- soon very tired.

    Friday-

    8:20 appointment for vitals, EKG and 2 vials of blood- no issue today.

    FYI

    Woke up in the middle of the night-actually Friday early AM and went on the MSKCC portal to see that my CA 15-3 went from 590 down to 380!!!! Yes so we think this is really working. Will know for sure when I get my scan in 30 days.

    Babs

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  • Southernsurvivor
    Southernsurvivor Member Posts: 632
    edited September 2017
    Congrats, Babs! Sounds like you had a wonderful trip and then came home to a huge decrease in your numbers - a win-win!

    Thanks for your update - a great, positive way to start my day!
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  • Donnajr
    Donnajr Member Posts: 15
    edited September 2017

    It's great that it seems to be working!! I know I'm going to have a really hard time fasting with no coffee! Lol Do you have to fast the second day too?


    So, week 1 is too days, weeks 2,3, & 4 are just 1 day?


    Thanks for answering all my questions!!


    I'm really gold you had a nice vacation too!! :

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  • babs6287
    babs6287 Member Posts: 2,021
    edited September 2017

    Week 1 is two days and week 4 is two days. The first day is about 6-7 hours and the second us about 1/2-1 hour. All the other weeks are just one short visit for blood. The long day you come to the clinic w/o eating or drinking You can eat and drink 3 hours after taking the pills. The next day you come fasting and then can eat 1 hour after taking the pills

    It's really not bad at all

    Babs

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  • Donnajr
    Donnajr Member Posts: 15
    edited September 2017

    thank you!

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  • Husband11
    Husband11 Member Posts: 2,264
    edited September 2017

    Thanks for the update. It's so great that it is working!

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  • babs6287
    babs6287 Member Posts: 2,021
    edited September 2017

    Had to go to MSKCC for my weekly check

    8 am weight temp blood pressure blood ox glucose and 2 vials of blood

    830 see study nurse and nurse practitioner

    All is good. I have to go again next week and then CT scans on 9/29. Fingers crossed!

    I feel fine just tired. No side effects as yet

    Babs


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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited September 2017

    Babs, WOOHOO! It's good to hear that your only SE is fatigue. My fingers are crossed for you, too.

    Hugs and prayers, Lynne


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  • zarovka
    zarovka Member Posts: 3,607
    edited September 2017

    tks bab. fingers crossed.

    >Z<

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  • Donnajr
    Donnajr Member Posts: 15
    edited September 2017

    Hi! Sounds like you are doing well. I am supposed to start the 5th but they told me every other week will be 2 days. I think they made a mistake because at first they told me the same amount of weeks you are doing. If that's the case I can't do it, it would cost me over $400 dollars a week just for the hotel. I can't afford that, :( hopefully they made a mistake. When are you scans? Please keep us updated!

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  • babs6287
    babs6287 Member Posts: 2,021
    edited September 2017

    Sorry I didn't write sooner.

    Went to Mskcc on Thursday. Did weight, blood pressure, glucose , and 2 vials of.blood. Then met with MO and trial nurse

    Because of Yom Kippur we had to move the scans from 9/29 to 10/4.

    Fingers crossed

    Babs

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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited September 2017

    Following along, and cheering you on!  

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  • Nkb
    Nkb Member Posts: 1,436
    edited September 2017

    Babs- following also and hoping for great news!

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  • babs6287
    babs6287 Member Posts: 2,021
    edited September 2017

    Donnait. They also provide a $ allowance for hotels. Did they tell you about that? I forgot the amount since I live across the street from MSKCC so knew I wouldn't be using it.

    Bab

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  • Donnajr
    Donnajr Member Posts: 15
    edited September 2017

    wow! They told me they don't reimburse... I have the number to the pharmaceutical company, I plan on calling them Monday to get all the inf

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  • babs6287
    babs6287 Member Posts: 2,021
    edited September 2017

    So crazy. They told me they definitely reimburse up to a set amount.

    Babs

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  • Donnajr
    Donnajr Member Posts: 15
    edited September 2017

    I'm pretty sure it's just my team, they seem to be having a hard time getting their facts right lately. I'm getting very frustrated with them but they have me in a hard place. I haven't had any treatments in a month due to waiting for them to get it together about this trial. :( I go to Dana Farber in Boston, supposed to be one of the good ones. :(. I just re-read your answer about the cycle days, same thing they told me the first time. I'm positive they can't change the protocol that's why I'm calling the company direct Monday. Thank you for the info!!

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  • Donnajr
    Donnajr Member Posts: 15
    edited October 2017

    Good luck tomorrow! I started it today! Hopefully it's a good one for us!! :

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  • babs6287
    babs6287 Member Posts: 2,021
    edited October 2017

    I hope it is!!!! Will keep you posted on my Ct results and TM results !

    Babs

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  • babs6287
    babs6287 Member Posts: 2,021
    edited October 2017

    Yesterday I had my Ct. Will advise on the results

    Bab

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  • babs6287
    babs6287 Member Posts: 2,021
    edited October 2017

    Went to MSKCC at 830

    830 weight, oxygen, glucose, blood pressure, EKG, 10 vials of blood-this took forever due to my VERY tired veins

    9:00 meeting with Study nurse and MO

    GREAT NEWS- My mo only had a preliminary report but my liver mets have DECREASED. Yippee! The GDC 0077 is working and it's so much easier with way less SE than chemo.

    Donnarj-I hope you find this as easy as I do and get similar results.

    I'll have the actual scan by Monday at which time I'll give you all I more in depth report.

    Babs

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  • babs6287
    babs6287 Member Posts: 2,021
    edited October 2017

    Just checked- all TMs went down-not as much as last time but scans are where it's at!
    Babs

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  • Nkb
    Nkb Member Posts: 1,436
    edited October 2017

    Babs- This Is such exciting news! I am so happy for you and so grateful that you are doing this study! In the future we may all be getting a "cocktail" that includes this drug if we have this mutation.

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  • Donnajr
    Donnajr Member Posts: 15
    edited October 2017

    That is great news!!!! I’m so happy for you! Yes so far it’s a very easy drug but I did have really bad leg cramps last night, hopefully it was just a fluke thing.

    Thank you for sharing, it has been a big help, I actually know a little more then my research team. Lol


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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited October 2017

    Babs, Great news! I am so happy that this treatment is working for you. WOOHOO!

    Hugs and prayers from, Lynne


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  • AnimalCrackers
    AnimalCrackers Member Posts: 701
    edited October 2017

    Fantastic news Babs!! So happy for you!

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  • Husband11
    Husband11 Member Posts: 2,264
    edited October 2017

    That is great news Babs. Lead the way to a cure!

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  • Southernsurvivor
    Southernsurvivor Member Posts: 632
    edited October 2017
    Babs, I'm so happy for you - HOORAY!! Thanks for sharing your good news and please continue to update us.
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  • babs6287
    babs6287 Member Posts: 2,021
    edited October 2017

    I hope that more of my BC sisters can benefit from this study-it seems that based upon what the study nurse told me they're getting really good results. Wouldn't it be great if this gave many of us many more months or years?!?

    Babs

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  • zarovka
    zarovka Member Posts: 3,607
    edited October 2017

    It doesn't suprise me that TMs are not down as dying cells contribute to TM burden. High TMs and good scans would be not suriprising.

    And that is awesome news for you and for everyone. We sure need some bad ass meds with few side effects. Thank you for dealing with this trial. You are paving a path for all of us.

    >Z<

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